The European HD Network
should provide a platform for professionals and people affected by HD and their
relatives to facilitate working together throughout Europe

The European HD Network
should facilitate natural history studies and interventional trials meeting
high standards (‘Good Clinical Practice’ = GCP) thus helping on the road
towards a cure of HD

The European HD Network
should be a true network in that all participants involved can take a lead and
propose, conduct and publish studies

How did the idea of a European HD Network come about?

An interventional trial testing Riluzole in more than 500 patients
in early stages of HD in 9 countries throughout Europe (‘European
Huntington Disease Initiative’ = EHDI-Trial) demonstrated that large
scale studies on HD can be done in Europe

Since the EHDI-Trial calls for an observation period of 3 year and
the last patients will have completed their observation period end of
April 2004, an infrastructure for clinical trials on HD in Europe
independent of a specific industrial sponsor was highly desired

A private American Foundation, the High-Q Foundation, decided to sponsor ‚The Huntington Project‘, a 10-year endeavour to speed up the process of finding ways to improve the natural course of HD

The idea of an Euro-HD Network was kickstarted at the Gordon Research Conference at Il Ciocco, Tuscany, in May 2003

Who finances the European HD Network?

A private American Foundation, High-Q, in the context of sponsoring 'The Huntington Project', a 10-year endeavor

An infrastructure for large scale clinical trials on HD throughout Europe (database, IT-tools, monitoring personal etc.)

An IT platform for communication tools (in the respective native languages) and e-trials

A forum for close cooperation of basic scientists and clinicians

Low threshold (native language!) support for study sites by language group coordinators

What does the European HD Network NOT provide?

Funding for individual projects

But: in case of approval of an application by the Board of
Directors a letter of support specifying the resources of
European HD Network made available to the project will be provided thus
making funding through national or international funding organisations
(EU, HDF, High-Q etc) more likely

First Steps ...

Set up IT and get approval by data security authorities throughout Europe